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The paper examines the ethical and legal challenges of making decisions for previously competent patients and the role of advance directives and legal representatives in light of the Oviedo Convention. The paper identifies gaps in the Convention that result in conflicting instructions in cases of a disagreement between the expressed prior wishes of a patient, and the legal representative. The authors also examine the legal and moral status of informally expressed prior wishes of patients unable to consent. The authors argue that positivist legal reasoning is insufficient for a consistent interpretation of the relevant provisions of the Convention and argue that ethical argumentation is needed to provide guidance in such cases. Based on the ethical arguments, the authors propose a way of reconciling the apparent inconsistencies in the Oviedo Convention. They advance a culturally sensitive approach to the application of the Convention at the national level. This approach understands autonomy as a broader, relational consent and emphasizes the social and cultural embeddedness of the individual. Based on their approach, the authors argue that there exists a moral obligation to respect the prior wishes of the patient even in countries without advance directives. Yet it should be left to the national legislations to determine the extent of this obligation and its concrete forms. [ABSTRACT FROM AUTHOR]

According to what we call the Principle of Procreative Beneficence (PB), couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being. In the first part of this paper, we introduce PB, explain its content, grounds, and implications, and defend it against various objections. In the second part, we argue that PB is superior to competing principles of procreative selection such as that of procreative autonomy. In the third part of the paper, we consider the relation between PB and disability. We develop a revisionary account of disability, in which disability is a species of instrumental badness that is context- and person-relative. Although PB instructs us to aim to reduce disability in future children whenever possible, it does not privilege the normal. What matters is not whether future children meet certain biological or statistical norms, but what level of well-being they can be expected to have. [ABSTRACT FROM AUTHOR]

This paper discusses keys to the moral procurement, treatment and disposition of remains used for scientific research, specifically those donated to the University of Tennessee’s Anthropological Research Facility (ARF). The ARF is an outdoor laboratory dedicated to better understanding the fate of human remains in forensic contexts, and focuses its research on decomposition, time since death estimates, body location and recovery techniques, and skeletal analysis. Historically, many donations were unclaimed bodies received from medical examiners (although it will be shown that this trend is changing), and it has been argued that the use of unclaimed bodies for medical or scientific purposes is a violation of autonomy since no consent was given by the individual. It is argued here, however, that the domain of autonomous choice extends to one’s own corpse only insofar as expressed wishes are made known prior to one’s death, and that in the absence of expressed intent toward final disposition, it is acceptable for institutions to receive donations from medical examiners or family members. This paper also discusses other philosophical issues related to donation, consent and autonomy, and the forensic benefits of research conducted at the Anthropological Research Facility. [ABSTRACT FROM AUTHOR]

This paper was delivered as the Presidential address for the 47th International Society for the Systems Sciences Annual Conference in Crete, Greece. It builds and elaborates on the theme of the conference, which was ‘Conscious Evolution of Humanity: Using Systems Thinking to Construct Agoras of the Global Village’. The role of true dialogue in the context of the trends towards globalization, and the predicament of indigenous people to sustain democracy and cultural dignity and autonomy, are discussed. Copyright © 2004 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Rationale, aims, and objectives Colorectal cancer (CRC) screening is widely recommended and implemented. However, sometimes CRC screening is not implemented despite good evidence, and some types of CRC screening are implemented despite lack of evidence. The objective of this article is to expose and elucidate relevant ethical issues in the literature on CRC screening that are important for open and transparent deliberation on CRC screening. Methods An axiological question-based method is used for exposing and elucidating ethical issues relevant in HTA. A literature search in MEDLINE, Embase, PsycINFO, PubMed Bioethics subset, ISI Web of Knowledge, Bioethics Literature Database (BELIT), Ethics in Medicine (ETHMED), SIBIL Base dati di bioetica, LEWI Bibliographic Database on Ethics in the Sciences and Humanities, and EUROETHICS identified 870 references of which 114 were found relevant according to title and abstract. The content of the included papers were subject to ethical analysis to highlight the ethical issues, concerns, and arguments. Results A wide range of important ethical issues were identified. The main benefits are reduced relative CRC mortality rate, and potentially incidence rate, but there is no evidence of reduced absolute mortality rate. Potential harms are bleeding, perforation, false test results, overdetection, overdiagnosis, overtreatment (including unnecessary removal of polyps), and (rarely) death. Other important issues are related to autonomy and informed choice equity, justice, medicalization, and expanding disease. Conclusion A series of important ethical issues have been identified and need to be addressed in open and transparent deliberation on CRC screening. [ABSTRACT FROM AUTHOR]

Respecting the autonomy and will of people has legitimately led to strictly control the use of constraint in care activities, and promote a care ethics centred around people's needs and wills. But constraint is underlying in any action aiming at making people do something, even with their consent, especially when their ability to evaluate what is best for them may be altered. Ceaselessly present in care, this ordinary, silent constraint should not be only deemed as a necessary evil to be prevented. In contrast with this legally-based view, the paper adopts a pragmatic perspective. Leaning on minute case studies carried out at disable people's homes, the empirical section takes up some key troubling moments between caregivers and patients as trials capable of revealing 'constraint in practice': a situation of uncertainty, doubt, hesitations on the appraisal of what is happening and how to deal with it, banning any clear-cut distinction between technical gestures and moral values. Having outlined the characters of such a 'situational ethics', the authors argue in conclusion that, provided caregivers are never quits with its use, constraint is compatible with care, and assume that care theories could fruitfully support this advocacy to 'maintaining the trouble' in care practices. [ABSTRACT FROM AUTHOR]

In the current era patient autonomy is enormously important. However, recently there has also been some movement back to ensure that trust in the doctor's skill, knowledge and virtue is not excluded in the process. These new nuances of informed consent have been referred to by terms such as beneficent paternalism, experience-based paternalism and we would add virtuous paternalism. The purpose of this paper is to consider the history and current problematic nature of counselling and consent. Starting with the tradition founded by Hippocrates we trace and seek to understand how relevant aspects of the patient-doctor relationship have evolved under the influences of subsequent moral theories. Finally we tentatively endorse certain modes of counselling in the current era in order to promote morally sound, good clinical practice. [ABSTRACT FROM AUTHOR]

Background This paper questions consumerist assumptions in current English social care policy and aims to look behind the processes of personalization to interrogate what 'choice and control' means in the lives of a diverse group of people with intellectual disabilities. Methods Data were from multiple interviews and direct practice recordings with nine people using personal budgets and were analysed using an interpretative approach. Results Identity, other people and personal budget processes were all important for choice and control. People needed to build confidence in themselves as decision-makers, both through peer support and through joint decisions with trusted others. Conclusions Practitioners need to take into account the spectrum of ways in which people may make decisions. Action needs to be taken both at the micro level of support interactions and at the macro level, with a clearer articulation of independent living in policy and strategy for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

The asymmetrical, federal construction of Bosnia and Herzegovina has been contested by all groups, but it has particularly influenced a significant element of Croat politics in BiH - their need to create 'their own' entity. Not being able to form a separate territorial unit, Croats created parallel institutions following the Herzeg-Bosna pattern: firstly in 2000, and again in 2011. This paper aims at analyzing the Croats' autonomist and secessionist politics in Bosnia and Herzegovina with special emphasis on the formation of parallel structures as a replacement strategy derived from the Croat inability to bring about a constitutional unit of their own. Using the model suggested in the introduction to this special issue, the problem is analyzed from the perspective of center-periphery dynamics in Bosnia and answers the question as to why territorial autonomy has been an impossible goal for Croats. [ABSTRACT FROM AUTHOR]

Copyright of Antipode is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

According to much of the extant research, the conferral of high‐status serves as an invaluable muse for creativity. That is, the research has suggested that high‐status affords individuals the confidence, freedom, and leeway necessary to bolster creative performance. However, this assertion is premised on the view that status hierarchies are stable and thereby the conferral of high‐status is irrevocable. In reality, ample research evidence has asserted that status hierarchies are often unstable, and hence, high‐status is not immutable. Consequently, there is a need to revisit the capacity of high‐status to bolster creativity under conditions of status instability. Our theoretical paper draws upon the socio‐cultural perspective of creativity, in order to develop a conceptual framework that identifies how status instability can, in fact, impede creative behavior of high‐status individuals. The liability of high‐status can arise via its impact on risk tolerance, perceived autonomy, and intrinsic/extrinsic reward orientation. Our framework also acknowledges how the individual trait of creative self‐efficacy can mitigate the negative impact of status instability. The research propositions we present alongside our framework are intended to guide future research in exploring the role of status in the generation of radical, creative behavior. [ABSTRACT FROM AUTHOR]

Background The basic human right of autonomy is underpinned by the ability to practice decision-making. The rights of people with disabilities to engage in autonomous decision-making are promoted as best practice and includes decisions around health and self-care. Little is known about autonomy in the field of long-term condition management. This paper explores how people with intellectual disabilities (ID) and their support workers experience and practice autonomy in relation to the management of diabetes. Methods Semi-structured interviews were completed in residential and independent living settings with people living with an ID and type 1 ( N = 8) or type 2 ( N = 6) diabetes and their support workers ( N = 17). The participant with ID's support worker was present as requested; however, the interviews were run separately with each participant rather than jointly. Thematic analysis was undertaken, and a constructivist lens informed both data collection and analysis. Results The analysis revealed a strong process of negotiated autonomy between people with ID and their support workers in relation to the daily management of diabetes. During times of transition, roles in relation to diabetes management were renegotiated, and the promotion of autonomy was prefaced within the context of risk and client safety. Goals to increase independence were drivers for negotiating greater autonomy. Conclusions The successful negotiation of autonomy in relation to diabetes illustrates the potential for people with ID to play a key role in the management of long-term health conditions. The study highlights the primacy of developing decision-making skills among people with ID. Promoting opportunities for decision-making and an ethos of supported decision-making through person-centred planning are all vital in working towards enhancing autonomy. [ABSTRACT FROM AUTHOR]

The main objective of this paper is to describe how quality of care may be improved during an involuntary admission process of patients suffering from Korsakoff's syndrome. It presents an empirically grounded analysis with different perspectives on 'doing good' during this process. Family carers', healthcare professionals' and legal professionals' ways of understanding and ordering this problematic situation appear very different. This could prevent patients from getting the proper care they need, with risk of more suffering and quality of life below the minimum acceptable. All this possibly lead to immoral dehumanizing situations. Firstly, the background of our empirical study is sketched. Secondly, the different perspectives on 'doing good' are summarized and compared. Thirdly, the tensions arising from the different conceptualizations of autonomy and different types of responsibilities of the actors are clarified. A common 'doing good' during involuntary admission necessitates removal of any tensions within the relational network by weighing and balancing the different perspectives on autonomy and the resulting responsibilities. With this in mind, we propose a renewed time/action table for involuntary admission, which tends to address all patients' needs at the right time. The solution presented might help healthcare professionals, who are squeezed in between patients, family carers, legal professionals and overall rules, to create practices in which patients suffering from Korsakoff's syndrome can maintain their dignity and receive the care they need. Earlier interventions, timely and adequate diagnosis, and diminishment of tensions between the different actors by fine-tuning their paradigmatic frameworks are suggested to be part of a solution. [ABSTRACT FROM AUTHOR]

Copyright of Antipode is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

In the Trobriand Islands of Papua New Guinea, sexuality is valued as a positive expression of relational personhood, registering the efficacy of consensual and pleasurable practice in producing and maintaining social relations. The power of sexuality to demonstrate individual and collective capacity and potential holds particular salience for unmarried young people. This paper draws on my ethnographic research on culture and HIV in the Trobriands to address perduring questions about the locus of individual autonomy in Melanesian sociality, where relational personhood shapes identity and modes of exchange in the moral economy. I focus on the gendered agency of youth sexuality, including the use of kwaiwaga, or love magic, in exercising and controlling desire. The narrative identities of two young women provide the lens through which questions of agency are explored, revealing how the autonomous mind, nanola, is central to understanding the embodiment of social relations, how the power of love magic transfers agency from one individual to another, and how individual assertions and acts are ultimately expressions of situated relationality. [ABSTRACT FROM AUTHOR]

Exome sequencing and whole genome sequencing (ES/WGS) can provide parents with a wide range of genetic information about their children, and adoptive parents may have unique issues to consider regarding possible access to this information. The few papers published on adoption and genetics have focused on targeted genetic testing of children in the pre-adoption context. There are no data on adoptive parents' perspectives about pediatric ES/WGS, including their preferences about different kinds of results, and the potential benefits and risks of receiving results. To explore these issues, we conducted four exploratory focus groups with adoptive parents ( N = 26). The majority lacked information about their children's biological family health history and ancestry, and many viewed WGS results as a way to fill in these gaps in knowledge. Some expressed concerns about protecting their children's future privacy and autonomy, but at the same time stated that WGS results could possibly help them be proactive about their children's health. A few parents expressed concerns about the risks of WGS in a pre-adoption context, specifically about decreasing a child's chance of adoption. These results suggest that issues surrounding genetic information in the post-adoption and ES/WGS contexts need to be considered, as well as concerns about risks in the pre-adoption context. A critical challenge for ES/WGS in the context of adoption will be balancing the right to know different kinds of genetic information with the right not to know. Specific guidance for geneticists and genetic counselors may be needed to maximize benefits of WGS while minimizing harms and prohibiting misuse of the information in the adoption process. [ABSTRACT FROM AUTHOR]

Performance measurement is a particular type of accountability, which might be imposed by governments but is institutionally implemented and individually experienced. Over the last three decades, the emphasis on measuring the performance of publicly funded services has risen, along with concerns about the need to demonstrate a wise use of public funds. This paper examines the dynamic interaction of the institutional and individual levels of accountability, by focusing on research assessment systems. A study of three universities in different nations reveals that the perceived impacts of these systems relate to specific institutional contexts, but that individuals' views from within the same context also vary considerably. Professionals understand and interact with accountability systems in a manner that reflects their own values, and this ensures that they will interpret and react to them in different ways. This makes designing accountability systems without negative affects on individuals a difficult task. [ABSTRACT FROM AUTHOR]

The aim of this paper is to re‐examine nursing work from a Marxist perspective by means of a critique of two key concepts within nursing: autonomy and caring. Although Marx wrote over 150 years ago, many see continuing relevance to his theories. His concepts of capital, ideology and class antagonism are employed in this paper. Nursing's historical insertion into the developing hospital system is seen in terms of a loss of autonomy covered over by the development of cults of loyalty toward those institutions, while the concept of emotional labour is used to re‐examine nursing's high valuing of "caring" and to understand it as potentially exploitative of nurses. Raising awareness of this alternative way of understanding nursing work can become a first step toward change. [ABSTRACT FROM AUTHOR]

This paper presents the results of the design and field deployment of multiple autonomous fixed‐wing unmanned aircraft into supercell thunderstorms. As part of a field campaign in Spring 2019, up to three fixed‐wing unmanned aircraft were deployed simultaneously into different regions of supercell thunderstorms, To learn more about the atmospheric conditions that lead to the formation of tornadoes. Successful field deployment is attributed to (a) a nomadic concept of operations that allows the unmanned aircraft system team and science team to work seamlessly together while satisfying all aviation regulations and (b) the ruggedized RAAVEN unmanned aircraft system with modular features that favor rapid, ease‐of‐use over the brute strength of previous designs. The concept of operations and the unmanned aircraft system are described along with results from a 4 day window where four storms were sampled: two of these storms were tornadic (formed tornadoes before, during, or after being sampled) and two were not. These results validate the feasibility of nomadic operation of multiple unmanned aircraft simultaneously in severe weather conditions. Further, the successful field deployments demonstrate the importance of the modular unmanned aircraft design. [ABSTRACT FROM AUTHOR]

On large estates, labour control has two dimensions: control of work itself and control of workers' private lives, including that of their families. Historically, plantation companies have always provided accommodation for their workers, and as a result play a central role in the supervision of the domestic sphere. This paternalistic aspect of labour relations has evolved from being coercive during the indenture system, through a progressive loosening. This paper analyses the history of paternalistic labour relations in Indonesia and Indonesian labour laws. It includes a description of compounds in Indonesian oil palm plantations, where thousands of permanent workers and their families are housed. The compounds are characterized by comprehensive and continuous supervision. Although they generally accept paternalistic labour relations as conferring them with a high degree of security, inhabitants also manage to develop particular ways of negotiating control and asserting autonomy. [ABSTRACT FROM AUTHOR]

ABSTRACT The nocebo effect, the mirror-phenomenon to the placebo effect, is when the expectation of a negative outcome precipitates the corresponding symptom or leads to its exacerbation. One of the basic ethical duties in health care is to obtain informed consent from patients before treatment; however, the disclosure of information regarding potential complications or side effects that this involves may precipitate a nocebo effect. While dilemmas between the principles of respect for patient autonomy and of nonmaleficence are recognized in medical ethics, there has not yet been an ethical discussion focused on the potential dilemma raised by the nocebo effect of informed consent (NEIC). This dilemma is especially pernicious, since it involves a direct causality of harm by the caregiver that is unparalleled by other potential harmful effects of information disclosure. This paper articulates the dilemma of the NEIC and offers a seminal ethical analysis. [ABSTRACT FROM AUTHOR]

In this paper, I report core findings of a small-scale qualitative study that I conducted with a group of young people with vision impairment who attended an inclusive secondary school in the Australian state of Queensland. My objective was to capture their voiced experiences of their schooling through face-to-face interviews and to develop a substantive theory that was grounded in the collected data. Relevant to the study was my status as an insider researcher, which impacted both data collection and analysis. Here, I develop the methodological process that I followed and present core findings of the study. These findings shed light on the practices within schools that are designed to promote inclusion yet perpetuate exclusion for students with impaired vision. [ABSTRACT FROM AUTHOR]

This paper develops a theoretical approach to children's rights in youth justice, located within a wider rights-based theory of criminal justice which emphasises the centrality of citizens' autonomy. Understanding what is special about children's rights in the youth justice system requires an understanding of how children's autonomy differs from that of adults. One difference is that within the legal system children are not considered to be fully autonomous rights-holders, because childhood is a time for gathering and developing the assets necessary for full autonomy. These assets should be protected by a category of 'foundational' rights. It is argued that an essential component of a rights-based penal system for children is that it should not irreparably or permanently harm the child's foundational rights. The concept of foundational rights can then underpin and strengthen international children's rights standards, including those relating to the minimum age of criminal responsibility, differential sentencing for children and adults and a rights-based system of resettlement provision. [ABSTRACT FROM AUTHOR]

Recently, a court in Belgium awarded a sum of 400 000 euros to the parents of a child with disability who at that point had already died of Sanfilippo syndrome. Their charge was not that the baby was born with disability, but that the child was born. The charge was brought in the child's name, and so effectively, the child had sued against its own birth. This so-called 'unique case' is analyzed with the work of the German philosopher Odo Marquard. Marquard's work on theodicy, and the question of suffering and evil, is very useful to explain why this case is the current apotheosis of a logic present in modernity: existence as a tribunal. This paper explains why Marquard's work sheds an interesting light on this case for today's medicine. [ABSTRACT FROM AUTHOR]

ABSTRACT What I call 'the standard view' claims that IRBs should not regard financial payment as a benefit to subjects for the purpose of risk/benefit assessment. Although the standard view is universally accepted, there is little defense of that view in the canonical documents of research ethics or the scholarly literature. This paper claims that insofar as IRBs should be concerned with the interests and autonomy of research subjects, they should reject the standard view and adopt 'the incorporation view.' The incorporation view is more consistent with the underlying soft-paternalist justification for risk-benefit assessment and demonstrates respect for the autonomy of prospective subjects. Adoption of the standard view precludes protocols that advance the interests of subjects, investigators, and society. After considering several objections to the argument, I consider several arguments for the standard view that do not appeal to the interests and autonomy of research subjects. [ABSTRACT FROM AUTHOR]

ABSTRACT This paper argues against the continued practice of Confucian familism, even in its moderate form, in East Asian hospitals. According to moderate familism, a physician acting in concert with the patient's family may withhold diagnostic information from the patient, and may give it to the patient's family members without her prior approval. There are two main approaches to defend moderate familism: one argues that it can uphold patient's autonomy and protect her best interests; the other appeals to cultural relativism by construing the principle of 'family autonomy' to be incommensurable with that of individual autonomy. We respond to the first approach by explaining how the familist arguments either depend on some unreasonable assumptions or simply fail to articulate. The critique of the second approach is based on our recent survey showing that there is no dichotomy of relevant values between the East and the West: we believe that the result can effectively block the familist's reliance on certain traditional or cultural values to explain their resistance to the incorporation of pluralist values. Despite our disagreement with familism, we consider the Eastern emphasis on the family to be conducive to the communication between patient, family members and medical personnel, which is indispensible to the patient's well being and autonomy. We conclude that respect for patient autonomy is perfectly consistent with the involvement of the family in making medical decision as long as the family plays a merely consultant role. [ABSTRACT FROM AUTHOR]

The practice of offering choice to those women with breast cancer for whom either breast conserving surgery or mastectomy would be equally beneficial has come to be seen as an important aspect of medical care. As well as improving satisfaction with treatment, this is seen as satisfying the ethical principle of respect for autonomy. A number of studies, however, show that women are not always comfortable with such choice, preferring to leave treatment decisions to their surgeons. A question then arises as to the extent that these women can be seen as autonomous or as exercising autonomy. This paper argues, however, that the understanding of autonomy which is applied in current approaches to breast cancer care does not adequately support the exercise of autonomy, and that the clinical context of care means that women are not able to engage in the kind of reasoning that might promote the exercise of autonomy. Where respect for autonomy is limited to informed consent and choice, there is a danger that women's interests are overlooked in those aspects of their care where choice is not appropriate, with very real, long-term consequences for some women. Promoting the exercise of autonomy, it is argued, needs to go beyond the conception of autonomy as rational individuals making their own decisions, and clinicians need to work with an understanding of autonomy as relational in order to better involve women in their care. [ABSTRACT FROM AUTHOR]

Genetic counselors may have an important role in helping the adolescent make an informed decision with regard to genetic testing and in helping them to adjust to genetic risk information. However, counseling techniques that are used with adults may not be always be suited to the adolescent population. Adolescence is a time of development during which separation from the family and formation of identity is achieved. The process of this development may impact the genetic counseling relationship. Family relationships may have a strong influence on the client's decision to have genetic testing. Additionally, it may be difficult to engage the client as adolescents may not have the ability to think abstractly and consider the short and long term consequences of genetic testing. It is helpful therefore to discuss the counseling process and techniques that may be useful when counseling these clients. This paper presents two case studies that illustrate some of the difficulties that may occur when counseling adolescents for genetic testing. The authors' have reflected on their clinical experience with these clients and this is presented here to add to the growing literature on this subject. [ABSTRACT FROM AUTHOR]

ABSTRACT Advance directives (ADs), which are also sometimes referred to as 'living wills', are statements made by a person that indicate what treatment she should not be given in the event that she is not competent to consent or refuse at the future moment in question. As such, ADs provide a way for patients to make decisions in advance about what treatments they do not want to receive, without doctors having to find proxy decision-makers or having recourse to the doctrine of necessity. While patients can request particular treatments in an AD, only refusals are binding. This paper will examine whether ADs safeguard the autonomy and best interests of the incompetent patient, and whether legislating for the use of ADs is justified, using the specific context of the legal situation in the United Kingdom to illustrate the debate. The issue of whether the law should permit ADs is itself dependent on the issue of whether ADs are ethically justified; thus we must answer a normative question in order to answer the legislative one. It emerges that ADs suffer from two major problems, one related to autonomy and one to consent. First, ADs' emphasis on precedent autonomy effectively sentences some people who want to live to death. Second, many ADs might not meet the standard criteria for informed refusal of treatment, because they fail on the crucial criterion of sufficient information. Ultimately, it transpires that ADs are typically only appropriate for patients who temporarily lose physical or mental capacity. [ABSTRACT FROM AUTHOR]

ABSTRACT Over the past several decades the 'affective revolution' in cognitive psychology has emphasized the critical role affect and emotion play in human decision-making. Drawing on this affective literature, various commentators have recently proposed strategies for managing therapeutic expectation that use contextual, symbolic, or emotive interventions in the consent process to convey information or enhance comprehension. In this paper, we examine whether affective consent interventions that target affect and emotion can be reconciled with widely accepted standards for autonomous action. More specifically, the ethics of affective consent interventions is assessed in terms of key elements of autonomy, comprehension and voluntariness. While there may appear to be a moral obligation to manage the affective environment to ensure valid informed consent, in circumstances where volunteers may be prone to problematic therapeutic expectancy, this moral obligation needs to be weighed against the potential risks of human instrumentalization. At this point in time we do not have enough information to be able to justify clearly the programmatic manipulation of human subjects' affective states. The lack of knowledge about affective interventions requires corresponding caution in its ethical justification. [ABSTRACT FROM AUTHOR]

Prominent thinkers such as Jurgen Habermas and Michael Sandel are warning that biomedical enhancements will undermine fundamental political values. Yet whether biomedical enhancements will undermine such values depends on how biomedical enhancements will function, how they will be administered and to whom. Since only few enhancements are obtainable, it is difficult to tell whether these predictions are sound. Nevertheless, such warnings are extremely valuable. As a society we must, at the very least, be aware of developments that could have harmful consequences. Indeed, if important values were to be jeopardized, we should take appropriate measures to protect them. This paper focuses on four central values: solidarity, personal responsibility, equality and autonomy. It delineates the conditions under which biomedical enhancements would undermine these values. It also details the circumstances under which these values would be unaffected by enhancements as well as those under which they would be promoted. Specifying these conditions is valuable; it would enable society to prepare appropriate ethical guidelines and policy responses in advance. [ABSTRACT FROM AUTHOR]

This study examines how those planning futures for young people with moderate-profound intellectual disabilities invoke, deploy and interpret contrasting definitions of adulthood and perceived capacity for autonomy and self-determination. Twenty-eight young people were followed through transition from children's to adult services. This paper incorporates data from interviews with young people, their carers and transition staff. Two discourses around adulthood were identified. One positioned the young people as adults entitled unequivocally to self-determination, invoking policy injunctions to do so. The second qualified the young people's adult status and claims to self-determination, emphasising the obdurate reality of intellectual disability. Transition to adult services for young people with intellectual disabilities raises difficult questions about the relationship between vulnerable young people, families, professionals and society. Reducing these to rigid moral polarities of 'right' and 'wrong' creates an unhelpful context for good decision making. A more constructive approach would include all stakeholders in discerning 'the right thing to do'. [ABSTRACT FROM AUTHOR]

This article aims to broaden and deepen debates on the everyday practices of autonomous activists. To do this we present three main research findings from a recent research project that looked in detail at what we called ‘autonomous geographies’. First, in terms of political identity, we highlight how participants in political projects problematise and go beyond the simple idea of the militant subject, set apart from the everyday who opposes the present condition. Second, we highlight how everyday practices are used to build hoped-for futures in the present, but that this process is experimental, messy and contingent, and necessarily so. Finally, we illuminate the contested spatialities embedded within political activism that are neither locally bounded nor easily transferable to the transnational. This exploration of everyday activism has illuminated that the participants we engaged with express identities, practices and spatial forms that are simultaneously anti-, despite- and post- capitalist. We argue that it is through its everyday rhythms that meaning is given to post-capitalism and it is this reconceptualisation that makes post-capitalist practice mundane, but at the same time also accessible, exciting, feasible and powerful. This paper draws upon material collected during a 30-month empirical research project into the everyday lives of grassroots, non-party political activists in the UK between 2005 and 2008. Three case studies were explored in detail – autonomous social centres, Low Impact Developments, and tenants’ networks resisting gentrification. [ABSTRACT FROM AUTHOR]

Resilience thinking offers a framework to emphasize dynamics and interdependencies across time, space and domains. It is based on understanding social–ecological systems as complex, and future developments as unpredictable, thus emphasizing adaptive approaches to management. In this paper the four clusters of factors that have been identified as building resilience in large-scale social–ecological systems are applied at the farm level. Suggestions on how these factors could be operationalized at the farm level are derived from workshops held with family farmers in Austria. The results show that farmers understand change as unpredictable and unfolding, have a number of strategies to ensure the flexibility and adaptability of their farm and build extensive networks to diversify information and income sources. However, these strategies, while ensuring adaptability and transformability, compete for scarce resources. The farmers thus face trade-offs between strategies that ensure the adaptive capacity of their farm over the long term and those ensuring profitability over the short term. Copyright © 2010 John Wiley & Sons, Ltd and ERP Environment. [ABSTRACT FROM AUTHOR]

Diagnostic self-testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point-of-care facilities and at home. Designed to allow earlier detection of diseases, self-testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and by helping society improve health and reduce health costs. However, the full implications of future home-based diagnostic technology for individuals and society remain unclear due to their novelty. We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home-based self-testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation. While the ethical issues are not necessarily new, the development of home-based self-testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. [ABSTRACT FROM AUTHOR]

In this paper, I address some of the shortcomings of established clinical ethics centring on personal autonomy and consent and what I label the Doctrine of Respecting Personal Autonomy in Healthcare. I discuss two implications of this doctrine: 1) the practice for treating patients who are considered to have borderline decision-making competence and 2) the practice of surrogate decision-making in general. I argue that none of these practices are currently aligned with respectful treatment of vulnerable individuals. Because of ‘structural arbitrariness’ in the whole process of how we assess decision-making competence, this area is open to disrespectful treatment of people. The practice of surrogate decision- making on the basis of a single person's judgment is arguably not consistent with ethical and political requirements derived from the doctrine itself. In response to the inadequacies of the doctrine, I suggest a framework for reasonableness in surrogate decision-making which might allow practice to avoid the problems above. I conclude by suggesting an extended concept of Patient Autonomy which integrates both personal autonomy and the regulative idea of morality that is required by reasonableness in deciding for non-competent others. [ABSTRACT FROM AUTHOR]

Most countries grant parents rebuttable legal rights to make treatment decisions on behalf of their young children, creating a presumption in favor of parental rights. This article identifies and provides a preliminary assessment of a perhaps surprising variety of arguments for the presumption in favor of this parental right. The arguments considered include those flowing from ideas that parents are motivated by their child’s best interests; that they have privileged insight into their child’s preferences and capacities; that parental support has clinical significance and may be contingent upon respect for the presumption; that parents and families typically bear the burden of treatment decisions; that parents’ views often have a religious basis; that it would be improper to override parents’ wishes other than in conditions of complete certainty; and that parents have ‘natural authority’ over their children. It is unlikely that this is an exhaustive list of the arguments that could be offered in favor of the presumption, and the treatment in the paper is brief. Nevertheless, it is hoped that enough is said to suggest that it is harder to defend the presumption than we might have supposed. [ABSTRACT FROM AUTHOR]

There is concern that the use of neuroenhancements to alter character traits undermines consumer's authenticity. But the meaning, scope and value of authenticity remain vague. However, the majority of contemporary autonomy accounts ground individual autonomy on a notion of authenticity. So if neuroenhancements diminish an agent's authenticity, they may undermine his autonomy. This paper clarifies the relation between autonomy, authenticity and possible threats by neuroenhancements. We present six neuroenhancement scenarios and analyse how autonomy accounts evaluate them. Some cases are considered differently by criminal courts; we demonstrate where academic autonomy theories and legal reasoning diverge and ascertain whether courts should reconsider their concept of autonomy. We argue that authenticity is not an appropriate condition for autonomy and that new enhancement technologies pose no unique threats to personal autonomy. [ABSTRACT FROM AUTHOR]

Prenatal screening, consisting of maternal serum screening and nuchal translucency screening, is on the verge of expansion, both by being offered to more pregnant women and by screening for more conditions. The Society of Obstetricians and Gynaecologists of Canada and the American College of Obstetricians and Gynecologists have each recently recommended that screening be extended to all pregnant women regardless of age, disease history, or risk status. This screening is commonly justified by appeal to the value of autonomy, or women's choice. In this paper, I critically examine the value of autonomy in the context of prenatal screening to determine whether it justifies the routine offer of screening and the expansion of screening services. I argue that in the vast majority of cases the option of prenatal screening does not promote or protect women's autonomy. Both a narrow conception of choice as informed consent and a broad conception of choice as relational reveal difficulties in achieving adequate standards of free informed choice. While there are reasons to worry that women's autonomy is not being protected or promoted within the limited scope of current practice, we should hesitate before normalizing it as part of standard prenatal care for all. [ABSTRACT FROM AUTHOR]

New parents suddenly come face to face with myriad issues that demand careful attention but appear in a context unlikely to provide opportunities for extended or clear-headed critical reflection, whether at home with a new baby or in the neonatal intensive care unit. As such, their capacity for autonomy may be compromised. Attending to new parental autonomy as an extension of reproductive autonomy, and as a complicated phenomenon in its own right rather than simply as a matter to be balanced against other autonomy rights, can help us to see how new parents might be aided in their quest for competency and good decision making. In this paper I show how a relational view of autonomy – attentive to the coercive effects of oppressive social norms and to the importance of developing autonomy competency, especially as related to self-trust – can improve our understanding of the situation of new parents and signal ways to cultivate and to better respect their autonomy. [ABSTRACT FROM AUTHOR]

Disparities in socioeconomic status correlate closely with health, so that the lower a person's social position, the worse his health, an effect that the epidemiologist Michael Marmot has labeled the status syndrome. Marmot has argued that differences in autonomy, understood in terms of control, underlie the status syndrome. He has, therefore, recommended that the American medical profession champion policies that improve patient autonomy. In this paper, I clarify the kind of control Marmot sees as connecting differences in socioeconomic status to health disparities. I then discuss his use of Amartya Sen's capabilities approach to justice, arguing that he is unsuccessful in relating autonomy as a descriptive property with a normative framework that can adequately explain why and to what extent we should reduce health disparities. [ABSTRACT FROM AUTHOR]

Title. Older people’s experience of falls: understanding, interpretation and autonomy Aim. This paper is a report of a study to explore the experiences of older people who suffered a recent fall and identify possible factors that could contribute to service development. Background. Falls in older people are prevalent and are associated with morbidity, hospitalization and mortality, personal costs to individuals and financial costs to health services. Method. A convenience sample of 27 older people (mean age 84 years; range 65–98) participated in semi-structured taped interviews. Follow-up interviews during 2003–2004 were undertaken to detect changes over time. Data were collected about experience of the fall, use of services, health and well-being, activities of daily living, informal care, support networks and prevention. Thematic content analysis was undertaken. Findings. Twenty-seven initial interviews and 18 follow-up interviews were conducted. The majority of people fell indoors ( n = 23) and were alone ( n = 15). The majority of falls were repeat falls ( n = 22) and five were a first-ever fall. People who reflected on their fall and sought to understand why and how it occurred developed strategies to prevent future falls, face their fear, maintain control and choice and continue with activities of daily living. Those who did not reflect on their fall and did not know why it occurred restricted their activities and environments and remained in fear of falling. Conclusion. Assisting people to reflect on their falls and to understand why they happened could help with preventing future falls, allay fear, boost confidence and aid rehabilitation relating to their activities of daily living. [ABSTRACT FROM AUTHOR]

Respect for autonomy is problematic in relation to public health programmes such as vaccination, as the success of such programmes depends on widespread compliance. European countries have different policies for dealing with objectors to vaccination programmes. In some countries compliance is compulsory, while in others objectors are exempted or allowed to enter the programme under specific conditions. In this paper I argue that the objectors should not be treated as a homogenous group as is done in the above-mentioned policies. Objectors have different arguments for not participating in vaccination programmes. Considering the value of respect for autonomy, some but not all of these arguments need to be accommodated by authorities. The concept of ‘narrative autonomy’ provides criteria to distinguish between tenable and untenable claims to the right to refuse vaccination. Narrative autonomy understands autonomy as essentially linked to identity, as this provides the moral framework with which we assess our first-order preferences. The above-mentioned concept of autonomy is derived from the concept of narrative identity as described by Marya Schechtman. She suggests that the application of the Articulation Constraint and the Reality Constraint enables us to establish the validity of personal narratives. Additionally, form and content features of identity, as proposed by Anthony Laden, will be used as criteria to establish the compatibility of the defectors’ arguments with shared scientific and political values. Such compatibility is essential to accommodate respect for autonomy in the context of public health. [ABSTRACT FROM AUTHOR]

The intertwining ideas of self-determination and well-being have received tremendous support in western bioethics. They have been used to reject medical paternalism and to justify patients’ rights to give informed consent (or refusal) and execute advanced directives. It is frequently argued that everyone is thoroughly unique, and as patients are most knowledgeable of and invested in their own interests, they should be the ones to make voluntary decisions regarding their care. Two results of the strong focus on autonomy are the rejection of the image of patients as passive care recipients and the suspicion against paternalistic influence anyone may have on patients’ decision-making process. Although the initial focus in western bioethics was on minimizing professional coercion, there has been a steady concern of family’s involvement in adult patients’ medical decision-making. Many worry that family members may have divergent values and priorities from those of the patients, such that their involvement could counter patients’ autonomy. Those who are heavily involved in competent patients’ decision-making are often met with suspicion. Patients who defer to their families are sometimes presumed to be acting out of undue pressure. This essay argues for a re-examination of the notions of autonomy and undue pressure in the contexts of patienthood and relational identity. In particular, it examines the characteristics of families and their role in adult patients’ decision-making. Building on the feminist conception of the relational self and examining the context of contemporary institutional medicine, this paper argues that family involvement and consideration of family interests can be integral in promoting patients’ overall agency. It argues that, in the absence of abuse and neglect, respect for autonomy and agency requires clinicians to abide by patients’ expressed wishes. [ABSTRACT FROM AUTHOR]

There are three lines of argument in defence of coercive treatment of patients with mental disorders: arguments regarding (1) societal interests to protect others, (2) the patients' own health interests, and (3) patient autonomy. In this paper, we analyse these arguments in relation to an idealized case, where a person with a mental disorder claims not to want medical treatment for religious reasons. We also discuss who should decide what in situations where patients with mental disorders deny treatment on seemingly rational grounds. We conclude that, in principle, coercive treatment cannot be defended for the sake of protecting others. While coercive actions can be acceptable in order to protect close family and others, medical treatment is not justified for such reasons but should be given only in the interest of patients. Coercive treatment may be required in order to promote the patient's health interests, but health interests have to waive if they go against the autonomous interests of the patient. We argue that non-autonomous patients can have reasons, rooted in their deeply-set values, to renounce compulsory institutional treatment, and that such reasons should be respected unless it can be assumed that their new predicaments have caused them to change their views. [ABSTRACT FROM AUTHOR]

In this paper we argue that sex-selective abortion (SSA) cannot be morally justified and that it should be prohibited. We present two main arguments against SSA. First, we present reasons why the decision for a woman to seek SSA in cultures with strong son-preference cannot be regarded as autonomous on either a narrow or a broad account of autonomy. Second, we identify serious harms associated with SSA including perpetuation of discrimination against women, disruption to social and familial networks, and increased violence against women. For these reasons, SSA should be prohibited by law, and such laws should be enforced. Finally, we describe additional strategies for decreasing son-preference. Some of these strategies rely upon highlighting the disadvantages of women becoming scarce, such as lack of brides and daughters-in-law to care for elderly parents. We should, however, be cautious not to perpetuate the view that the purpose of women is to be the consorts for, and carers of, men, and the providers of children. Arguments against SSA should be located within a concerted effort to ensure greater, deeper social and cultural equality between the sexes. [ABSTRACT FROM AUTHOR]

Delegating greater authority and decision making power to front line organisations, including devolution of control through the system of ‘Earned Autonomy’ is a key component of the UK Government's modernisation agenda for the public services. The principle of Earned Autonomy is that the highest performing organisations are subject to less central control and allowed increased operating freedoms. This paper explores the implementation of Earned Autonomy in the English NHS and addresses the question of whether the incentives implicit within Earned Autonomy are both sufficiently powered and aligned to the motivations of senior hospital managers to secure the desired improvements in organisational performance. [ABSTRACT FROM AUTHOR]

Title. Users’ views of prison health services: a qualitative study. Aim. This paper is a report of a study of the views of prisoners about health services provided in prisons. Background. Prison provides an opportunity for a ‘hard to reach’ group to access health services, primarily those provided by nurses. Prisoners typically have high health and social needs, but the views and experiences of prisoners about health services in prison have not been widely researched. Method. Semi-structured interviews were carried out with 111 prisoners in purposively selected 12 prisons in England in 2005. Interviews covered both prisoners’ views of health services and their own ways of caring for their health in prison. Interviews were analysed to develop a conceptual framework and identify dominant themes. Findings. Prisoners considered health services part of a personal prison journey, which began at imprisonment and ended on release. For those who did not access health services outside prison, imprisonment improved access to both mental and physical health services. Prisoners identified accessing services, including those provided by nurses, confidentiality, being seen as a ‘legitimate’ patient and living with a chronic condition as problems within the prison healthcare system. At all points along the prison healthcare journey, the prison regime could conflict with optimal health care. Conclusion. Lack of autonomy is a major obstacle to ensuring that prisoners’ health needs are fully met. Their views should be considered when planning, organizing and delivering prison health services. Further research is needed to examine how nurses can ensure a smooth journey through health care for prisoners. [ABSTRACT FROM AUTHOR]

The concept of sustainable consumption (SC) has been proposed as a way of operationalising sustainable development (SD). However, until now, in view of the difficulties in conceptualising SC, emphasis has been placed mainly on a pragmatic approach. In an a-conceptual and pragmatic account of SC, many problems remain unaddressed, such as the danger of the notion becoming empty and lack of integration between the different dimensions of sustainability. In this paper, we propose that the informational space provided by the capability approach (CA) offers a conceptual framework to elaborate SC. The CA is employed here (i) to discuss the philosophical underpinnings of SC as part of a strategy for enhancing quality-of-life and (ii) to investigate the links between the different dimensions of SC. Emphasis on autonomy, freedom, and public reasoning in the CA can help in contextualising and providing an organising frame for SC policies. Copyright © 2007 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]